Since my December 2, 2005 Non-Hodgkin Lymphoma diagnosis, I've been on a slow-motion journey of survivorship. Chemo wiped out my aggressive disease in May, 2006, but an indolent variety is still lurking. I had my thyroid removed due to papillary thyroid cancer in 2011, and was diagnosed with recurrent thyroid cancer in 2017. Join me for a survivor's reflections on life, death, faith, politics, the Bible and everything else. DISCLAIMER: I’m not a doctor, so don't look here for medical advice.

Saturday, December 30, 2006

Today, riffling through a pile of accumulated mail, I come upon a terse letter from someone who works for the Board of Pensions of the Presbyterian Church (U.S.A.). It reads as follows:

"I am in receipt of your application for Optional Death Benefits. I regret to inform you that you do not meet the medical underwriting requirements and are, therefore, ineligible for participation in the program at this time. This decision was based on the information provided on your medical statement."

So, I've been rejected for supplementary term life insurance. I can't say I'm terribly surprised, but it is disappointing. I'd been hopeful that my in-remission status, combined with the power of the relatively healthy group that are my colleagues in ministry, could put me over the top.

Evidently, it was not to be. The medical underwriters took one look at the words "Non-Hodgkin Lymphoma" on my application, and concluded they don't like the odds of my living another ten or fifteen years.

I suppose that makes me, officially, a statistic.

Usually, when we hear that someone has "become a statistic," it means they've already bought the farm. The car's wrapped around the telephone pole, upping the county's annual death-by-auto total by one. It's an oddly dehumanizing negation of a life, that expression.

The teenage driver laid out in the casket in the funeral home is obviously so much more than a statistic. The teary-eyed family members – eager to reminisce, as though spinning tales would bring their loved one back to life – know that very well. Yet, to some anonymous actuary running his or her finger down a long column of numbers, that makes little difference. Do the numbers breathe? Do they laugh? Do they cry?

"The people who walked in darkness have seen a great light..." (Isaiah 9:2) Those words have always given me a thrill on Christmas Eve.. There's something about that primal image of light in the midst of darkness that emboldens the human soul.

These are the words I chose, this year, as the basis of my Christmas Eve sermon. It's a different crowd I preach to, on Christmas Eve. Most preachers find this to be true. A good many of our Sunday-morning regulars are on the road, visiting friends and family for the holidays. Many of the others who show up are the "C and E" people (that's "Christmas and Easter," for the uninitiated). I've been at this church long enough, now – sixteen years – that I know a great many of them, by sight if not by name.

As I was thinking about what to preach to this very different congregation, I realized many of my listeners would not be up on the details of my medical situation. Some of them might not know I'm in remission. So, I decided to include a brief medical update in the early part of my sermon. This is what I said:

"If you'll allow me a few moments to speak personally, it's a special joy for me to be here, this Christmas – because last year, at this time, I wasn't entirely sure I would be. Just over a year ago, I learned of my cancer diagnosis – Non-Hodgkin Lymphoma. By the time Christmas Eve rolled around, I'd learned just enough about the disease to know I had a tough road ahead. Chemotherapy was in my future, and I'd heard all the horror stories, and then some.

Most cancer survivors will tell you that the time right after diagnosis is the darkest time. One year ago, I was right in the midst of all that, trying to bring a Christmas Eve message of light and peace and joy. Last Christmas, if truth be told, I felt more like those people of whom the prophet Isaiah speaks: the ones who walk in darkness.

This Christmas, praise God, my treatments are all behind me. I'm still in remission, with every hope that good health will continue for a very long time. I've learned a few things, since last Christmas, about faith – the same sort of things Paul had learned, I suppose, by the time he wrote these words to his friends at Philippi:

‘I have learned to be content with whatever I have. I know what it is to have little, and I know what it is to have plenty. In any and all circumstances I have learned the secret of being well-fed and of going hungry, of having plenty and of being in need. I can do all things through him who strengthens me.' [Philippians 4:11b-13]

‘The people who walked in darkness have seen a great light.' I wonder if you or I ever truly understand what a marvel light is. You know, not even the scientists have figured it out. They've sought to understand light, at its most basic level, and they've come up empty. One of the greatest debates in twentieth-century physics was whether light is, fundamentally, a particle or a wave. Then, the strange new field of quantum mechanics opened up, and word finally trickled back from those investigations: light is both – and neither. There's one thing about light I do know: you've got to be in darkness, yourself, before you fully appreciate it. You can't do a whole lot of stargazing under the streetlights of a shopping-mall parking lot."

Lots of people – including a great many in our Christmas Eve crowd – have been doing just that, in recent weeks. They've tried to snatch a few moments, amidst the holiday madness, to glimpse a star or two. Yet, in this consumer culture, the places where most of us spend our nights simply aren't dark enough to catch sight of the one, true star.

The personal darkness that comes with a cancer diagnosis does provide a certain clarity of spiritual vision. I wouldn't wish the experience on anyone, of course, but it does offer that small side-benefit. The message I have for anyone else who's traveling the road of serious illness is this: Watch for the light. Truly, it is there.

Saturday, December 23, 2006

I read something interesting the other day – some eloquently-crafted reflections by Elissa Rubin, a television producer and friend of Leroy Sievers, the National Public Radio commentator who’s also keeping a blog about his experiences with cancer. Elissa composed this reflection after visiting a chemo-infusion facility at Johns Hopkins Hospital in Baltimore, while filming a special on cancer for the Discovery Channel. Leroy posted it in the December 20th installment of his blog, My Cancer:

“What struck me almost instantly was that no one really looked sick. People were in street clothes, flannel shirts and blue jeans, carrying purses and computers. There was a woman in a purple cashmere sweater, one man in an elegant business suit. No bathrobes, no hospital gowns. Aside from looking a little tired, no one looked like he belonged in a hospital. Or that their lives now hinge upon what happens in this room, or that each one now exists in a world of prognoses and time limits. None of that was evident. I felt like I was looking around the platform of a metro station, except for the surreal fact that everyone was hooked up to a machine, with chemotherapy running through their veins, killing the cells that are trying to kill them.

Then you look around and think about what it means to come here, every week, sometimes from hundreds of miles away, and sit plugged into a machine for six hours. You see a room of horribly interrupted lives – the job promotion that just couldn't be taken, the missed soccer games, term papers that would have to be turned in next semester, maybe next year. Marriages thrown into shock, children put in the upside-down position of having to worry about their parents. If anything, this should be a place of raw emotion on display – after all, everyone is in the same position and everyone knows what the person next to him is probably thinking and feeling. It should have been a room filled with anger, yelling, objects crashing against the wall – yet no one even looked particularly sad. This was a place of remarkable calm. Maybe because it was a place – the only place right now – that offered anyone any hope. People were here to fight their cancer, to get better, to keep on living. This was the place for the people who have that option – the so-called lucky ones. At least their doctors were able to offer a plan – one that explicitly said, ‘You do have a chance to beat this, to live longer.’ This was a room of science and medicine, bright lights, protocols and doctors. Finally, there was an opportunity to do something to a disease that had stripped you of all control.”

That experience of being stripped of control goes with the territory, for those who have cancer. So many aspects of life are put on hold, when the single most important thing you can do is to sit next to an IV pole and wait for the drip, drip, drip of those toxic compounds. When it’s all over, and that blessed word “remission” resounds through the corridors of the mind, is there a corresponding return of the feeling of being “in control”?

Only some of the time – at least, that’s been my experience. I seem to alternate between taking up the tasks of life with enthusiasm and waiting for the other shoe to drop. I’m living into this experience of survivorship one day at a time.

Being a survivor isn’t as easy as it may seem, to those who haven’t been through a life-threatening experience. One may imagine – from the outside, looking in – that, once the all-clear is sounded, everything simply reverts to the way it was, pre-cancer. Not so. There’s a new appreciation for what’s important in life – and a corresponding impatience with everything that isn’t. It’s hard to make long-range plans. Like nearsighted people who have lost their glasses, we cancer survivors can only see so far. We live in the present, more than we used to. In the back of our minds is a low-level, but persistent anxiety, that bobs up to the surface of our minds, unbidden: What if it comes back?

In such moments, there’s still that worrisome feeling of loss of control. We no longer see ourselves as captains of our own destiny (as though we ever were).

A ministerial colleague shared this prayer, a couple of years back. I believe she said it’s from a book called Prayers in Celebration of the Turning Year, by Edward Tyler:

Since we cannot make the journey backward into innocence,help us to go forward into wisdom.Since we cannot begin again from the beginning,help us to go faithfully on from here.Since we cannot turn ourselves by our own willing,will you turn us, Great God, to yourself.

Friday, December 22, 2006

Well, it took me a while to hang those Christmas lights. I’ve been having a little difficulty staying on task, these days. But it got done, eventually – just an hour or so before our church youth group arrived for their annual, post-caroling Christmas party.

We finally did get our Christmas tree, too – again, just long enough before the carolers arrived to get the ornaments hung. The local Christmas tree lots were out of the good stuff, by the time we got there, so we drove the extra distance to a tree farm. We happened upon the right candidate just before it got too dark to see – a huge white pine (a kind we’ve never had before). It fills up the living room rather nicely – and, being recently cut, it’s not likely to lose its needles any time soon.

These days before Christmas this year are busy, and full. I can’t help thinking back, though, to last year, when Christmas was an altogether different sort of holiday for us.

My cancer diagnosis was only a couple of weeks old. I can remember numbly going through the holiday motions – getting a tree, decorating it, hosting the annual Youth Connection party – but I honestly can’t recall what I was thinking, through most of that time. I was a jumble of emotions, having just “come out” to the family and the congregation as a cancer patient. I can remember wondering, glumly, if that would be my last Christmas – maudlin, maudlin! – though those are sort of thoughts that do bubble up, when the diagnosis is still new.

This year is entirely different. The little family rituals we go through, in these pre-Christmas days, are comforting rather than disturbing. Last year, I thought I might be dying. This year, I know I’m living with cancer.

Monday, December 11, 2006

Yesterday, I accompanied a group of church members to see the new film, The Nativity Story. I'd heard good things about this fresh retelling of a very old and beloved story, and I wasn't disappointed.

Unexpectedly, I found myself in tears at a few points: when Mary and her cousin, Elizabeth, recognize the wonder of two very special babies growing within them; when Joseph agrees to stand by his betrothed, despite the scandal of her seemingly illicit pregnancy; and, of course, at the birth itself. I don't usually cry in movies, but this one had me blubbering like a fool. (Well, maybe not blubbering, but as close to it as I typically get.)

Everything I've been taught in seminary about Bible study says this is not how to approach these ancient texts. Matthew's and Luke's nativity stories should not be harmonized into one, say the biblical-studies professors. These are two completely separate accounts, that by all rights ought to stand on their own. Matthew tells of wise men traveling from the east, and Luke of shepherds and angels. Matthew's more interested in Joseph's role, and Luke in Mary's. There's nothing in the Bible to justify the conventional Christmas-card tableau of shepherds and wise men all showing up at the same time, gazing in wonder at the babe in the manger – as a beaming star directs the world's attention to the scene, like some first-century shopping-mall spotlight (I wonder how Herod's soldiers could have missed that)?

But that's what this film portrays. It's the iconic Christmas image, a celluloid version of the familiar Christmas creche, beautifully and sensitively re-created. I'm surprised by how powerfully these images still speak to me, even after years of objective, academic study.

I've been paging through a book a friend sent me, some months ago, that I've had on my to-do list for a while. Terri is a fellow pastor, and a cancer survivor. She found it helpful, during her own treatment.

In Cancer As a Turning Point, psychologist Lawrence LeShan suggests that some cancers could be linked to personal frustration, resulting from a feeling of being blocked in one's vocational life. LeShan's theory is that this blocked feeling suppresses the immune system, making us susceptible to illness. LeShan's book is filled with anecdotes of patients who decide to chase long-deferred dreams, taking the advice of folklorist Joseph Campbell to "follow your bliss," and who get better.

"A very large number of us grew up oriented toward what we should do rather than what we would enjoy doing; toward what we should want in our life rather than what we really want. Our actions are usually based on these ‘shoulds' rather than of the question of ‘what would fulfill me – what style of being, relating, creating would bring me to a life of zest?' This is the life, this life and the search for it, that mobilizes the immune system against cancer more than anything else we know today." - Lawrence LeShan, Cancer As a Turning Point (Plume, 1994), pp. 62-63.

I sent the people out from worship yesterday morning with the charge to "follow the star" in this Advent season. I wonder what that means for me, as a cancer survivor?

My cancer is changing me – making me less inhibited about crying in movies, more drawn to expressive, creative activities, less patient with routine, administrative grunt-work. I feel much more likely, at this stage of my life, to set out, magi-like, questing after some beaming star, than to sit behind a desk, making sure every "i" is dotted and every "t" crossed. This means I've been dropping some balls, administratively speaking – not compulsively cleaning up so many messes around the church, tolerating a bit more chaos than usual. (I've found that many of these low-level problems eventually resolve themselves without me.)

Maybe that's my spiritual growing edge, these days.

Today, I should be paying bills. I think I may hang Christmas lights, instead.

Saturday, December 09, 2006

This afternoon I drive over to Dr. Lerner’s office for a consultation. This is the first time Claire hasn’t accompanied me for one of these. We already know, from last Friday’s phone call, that there was nothing remarkable about my CT scan, so we expect the consultation to be rather perfunctory.

It is. Port flush... uneventful. Blood work... normal. Examination... a quick once-over, with the doctor feeling my neck, armpits and groin for lumps, then a quick listen to my heartbeat and breathing, through the stethoscope.

Then, we get down to business. Dr. Lerner opens my file, reads through the radiologist’s report, and examines a miniature version of my CT scan pictures. Everything looks good, he tells me. There’s no change in the appearance of the scar tissue, what remains of the abdominal mass.

He’d like to see me in another three months – this time, after another PET scan as well as a CT scan. I ask him how long he thinks it will be before we can begin spacing these tests out, at longer intervals. He says he’d like to keep the three-month testing interval in place until at least two years have elapsed.

Dr. Lerner reminds me that I was diagnosed with two different kinds of cancer cells: indolent and aggressive. With the aggressive cells, he explains, there is a two-year window, during which a high degree of vigilance is necessary. After two years, the chance of recurrence drops off significantly. As for the indolent cells, there will probably never be a time when we can completely let our guard down. Indolent lymphomas can persist below the radar for many years, before coming back.

Should that happen, he reminds me – should I discover a lump in the neck or armpit, for example, and a biopsy reveals it to be indolent lymphoma cells – the strategy could be simply to watch and wait for a while. Indolent lymphomas can be so slow-moving that “no action” is sometimes the best action. If an immediate response is called for, there would very likely be new treatments to choose from. The field of lymphoma treatment is changing so fast, Dr. Lerner points out, that even two years from now the treatment protocols could be completely different.

I ask him how long he’s planning to keep the implanted port in. As long as it’s not giving me any problem, he says, he’d like to leave it in “a while longer.”

Hmmm... the ravenous beasts may have been driven off, for now, but it seems my wilderness guide is still keeping the shotgun loaded.

So, I’m in a two-year window. Every three months – once each season – I’ll submit to one sort of scan or another. I’ll of course be hoping the results continue to be as unexciting as they are today.

“Stable is good,” the nurse said to me, as she took my temperature and blood pressure, before the doctor came in. Indeed it is.

Saturday, December 02, 2006

Today is the one-year anniversary of my diagnosis. One year ago today, Claire and I were sitting in one of Dr. Lerner's examining rooms, as we heard him share the biopsy results confirming that I have cancer.

The process of diagnosis took some considerable time, of course. For more than two months prior to that date, I knew a cancer diagnosis was possible, even likely. Yet, it was not until December 2 that we were sure. That very evening, we began informing family, friends and church members. Life has never been the same since.

The past twelve months have been quite a journey. I've traveled from shock, bewilderment and fear, through a self-imposed crash-course in human biology, through a whole season of chemotherapy treatments and more tests than I could number, to the place where I now – thankfully – find myself: in remission.

As I shared in yesterday's entry, the preliminary results of my latest CT Scan indicate that my remission is continuing. I'm thrilled with that news, of course, although the victory is not complete. It can never be complete. For, as I understand it, the type of cancer I have is not one that can ever be considered "cured." I'll be going for periodic scans for the rest of my life. Always, in the back of my mind, will be the nagging thought that it could – and very possibly will – return.

That's all right, though. I can live with that. (What choice do I have?)

One of the most influential books for my seminary student generation of the late 1970s and early 1980s (and for generations since) has been The Wounded Healer, by Roman Catholic pastoral theologian Henri J.M. Nouwen. Nouwen's main point, in this brief but profound reflection on ministry, is that authentic ministry begins at the point of our own personal woundedness. If we pastors are to serve in a truly Christlike way, we must get in touch with the ways we are wounded, ourselves – and, from that place of our own healing, reach out to others.

"The world breaks all of us. Some of us become strong at the broken places." Ernest Hemingway wrote those words (or words very much like them). Tragically, Hemingway – who died of a self-inflicted shotgun blast – never learned how to become strong at his own broken places. Still, It's a thought very much in line with Nouwen's model of ministry.

The ultimate model for that sort of ministry, of course, is Christ himself:

"Jesus came and stood among them and said, ‘Peace be with you.' Then he said to Thomas, ‘Put your finger here and see my hands. Reach out your hand and put it in my side. Do not doubt but believe.'"(John 20:26-27)

There are pitfalls to the "wounded healer" style of ministry, of course. I've known some colleagues, over the years, who have put a bit too much emphasis on their own woundedness, and not enough on their healing – filling sermons and pastoral conversations with "poor me" autobiographical detail. Some have sought to transform congregations into their own personal therapy groups (which, ultimately, helps neither them nor their people).

I hope that, in what I've written here over the past year or so, I've struck an appropriate balance. Cancer, in our culture, is too often shrouded in secrecy. I've felt the need to break that silence: to tell my own story, so others may know they're not alone. I've not written, primarily, as a pastor, but as a cancer survivor.

Am I celebrating my one-year anniversary? Not really. But you can be sure I'm noting it. It's a milestone, a mark of how far I've traveled. And the journey continues...

Yesterday I went for my six-month CT scan. Today, late in the afternoon, a voice-mail message arrives from someone in Dr. Lerner's office, notifying me that the doctor has received the radiologist's report. The report indicates, with typical medical understatement, that what's left of the mass in my abdomen is "stable."

This is good news. It means the tumor hasn't grown, since my last scan three months ago. The shrunken mass that remains is undoubtedly only harmless scar tissue.

Yesterday, as I lay on my back, half in and half out of the donut-hole of the CT-scanner, I was struck by how utterly remarkable this technology is. In the space of a couple of minutes, causing no pain or discomfort other than the prick of the needle that injects contrast fluid into my arm, the CT scanner peers into my insides. It "sees" parts of me that I, myself, have never seen. It reveals my inmost self (anatomically speaking).

Yet, there are deep mysteries even the CT scanner cannot discern – mysteries sung of by the ancient poet who wrote Psalm 139:

"O Lord, you have searched me and known me....

"O Lord, you have scanned me."

"For it was you who formed my inward parts;you knit me together in my mother's womb. I praise you, for I am fearfully and wonderfully made.Wonderful are your works;that I know very well.My frame was not hidden from you,when I was being made in secret,intricately woven in the depths of the earth. Your eyes beheld my unformed substance."

For this Hebrew sage, human gestation is a mystery. For who can discern the dark, mysterious processes that unfold within a mother's womb, as the human frame is slowly "knit together" over the course of many months? Only God can see into this shadowy place, the psalmist insists.

Today, physicians casually assume a Godlike vantage-point, as they peer into the wombs of expectant mothers with their ultrasound machines. In a similar way, using a different sort of machine, the radiologist has measured the dimensions of the scar tissue in my abdomen. Yet still there are parts of our inmost selves that stubbornly deflect the scientist's inquisitive eye:

"In your book were writtenall the days that were formed for me,when none of them as yet existed. How weighty to me are your thoughts, O God!How vast is the sum of them! I try to count them – they are more than the sand;I come to the end – I am still with you."

The doctors can videotape the beating heart of a fetus in utero, and they can scope out the size of a cancerous tumor – incomprehensible wonders, all, to the Hebrew mind – but still they cannot number "all the days that were formed for me," or for anyone else.

There are mysteries, yet, to this human life of ours. Day by day, in sickness or in health, each of us lives into such mysteries.

Monday, November 20, 2006

Today I come across a link to a blog written by another cancer survivor (brain, spinal and lung cancer). Leroy Sievers is his name, and he’s a writer and journalist – having worked for CBS News and ABC News. At one time, he was the executive producer of the Nightline television news program. Now he’s keeping a cancer diary much like this one, for National Public Radio.

Here’s something Leroy has written, reflecting on his last year or so of living with cancer:

“My body has changed in some ways that are obvious, and in others that aren't. I have a ridge in my skull where they cut it open to take out the brain tumor. You can feel the screws in the plates that hold my skull together. I'm heavier than I'd like to be. I put on weight when I was on steroids, and I haven't been able to work out much the last year. I hate the extra weight, though my doctors seem to think it's healthy.

Emotionally? Over the past year, I've hit the depths of sorrow, thrown in a little anger, too. Some hope, but probably not as much as I should have. Frustration. The whole gamut of human experience. And maybe that's one of the lessons here. In spite of the cancer, in spite of what we all go through, in the end, we're all just human. We're like everybody else. Except that we're not.

I try to make the most of my life these days. But I was really trying to do that before my diagnosis, too. My view of the future is a little cloudier; it's no longer open-ended. Not everything is possible anymore. I'm pretty much an optimist still, but that has been seriously tested, too.”

I’m interested to hear that Leroy mentions anger. I’m getting in touch with the fact that anger is an issue for me right now – sort of a delayed reaction to what I’ve been through.

During my chemotherapy, I simply didn’t have time for anger. I had to marshal all my emotional resources in the service of just getting by. The reality is, I’ve probably been stuffing my anger about the cancer for some considerable time. When I received first one clean PET/CT scan report, then another (in late May and early September) that was no time for feeling angry, either. I was supposed to feel relieved (and one part of me did, of course).

So what happens to all that suppressed anger? The answer seems to be that it’s coming out, inappropriately. I find I have a short fuse, these days, for petty frustrations. Other people around me have noticed it, too (in truth, they picked up on it before I did). It’s as though there’s a little voice in my head that keeps whispering, “You shouldn’t have to put up with this nonsense: you have cancer!”

I’m finding ways to procrastinate on things I should be doing – like dealing with the accumulated mail at home (comprised, still, of way too many medical bills and insurance statements, that only serve to remind me of my medical condition). Last month, I found it hard to get our 2005 income tax information to the accountant – tackling that job only at the last minute, just a day or two before the mid-October deadline for the extension I’d filed for last spring. Procrastination, of course, is a classic passive-aggressive reaction.

I have the most energy for creative endeavors, like writing and preaching. Having crashed hard into the brick wall of life’s limited duration, it’s as though the things that matter most to me are the things I create, things just may live beyond me. (Maybe, too, that’s why I felt so determined to apply for additional life insurance, during last week’s open-enrollment period.)

It’s possible that my cancer has bumped me up an adult-development stage. Back in seminary, we learned about psychologist Erik Erikson’s stages of adult development. The last three of his eight stages – with the typical ages and the challenges and tasks people typically face at those ages – can be described as follows:

According to Erikson, the 40s and 50s are the prime time for “generativity” – for creating that legacy we’ll leave behind when we die. What happens, I wonder, when a disease like cancer threatens to move the termination-point of life up a decade or two, or three? Does it mean, in my case, that cancer has abruptly shoved me forward, existentially-speaking, from “Middle Adulthood” into “Maturity” – way before I feel ready to be there? If that’s what I’ve been feeling (or, at least, worrying about), then it’s no wonder I’m feeling a bit angry. It’s the psychological equivalent of “the bends” – what scuba divers get when they surface too quickly.

How I sort all this out, I’m not sure. It’s clear that, remission or no remission, I’m still living with cancer, in an emotional sense.

Tuesday, November 14, 2006

I try to keep up with a few other blogs written by cancer survivors. One of them, My Private Casbah, by a New Orleans woman named Bint Alshamsa, is quirky, but amusing - sometimes even profound.

Here’s a bit of cancer survivor’s humor, from her November 2, 2006 entry. I realize it may not be for everyone.

You’ve gotta be able to laugh to get through an experience like this...

Thirteen Fun Things To Do When You Have Incurable Cancerby Bint Alshamsa

1. If you're planning on getting married before you croak, you can always ask the florist for a discount by promising her repeat business in the form of exclusive rights to your up-coming funeral display.

2. Telling a mechanic that you need to get your car repaired so that you can drive to MD Anderson for a last ditch experimental treatment attempt for your incurable cancer is a good way to get him to finish with yours before he even starts on the dozen cars that were there before you.

3. If no one knows that the oncologist says you're in remission, you can get really good presents from your friends by telling them that this might be the last birthday/Eid/Christmas that you'll ever get the opportunity to celebrate and they'll want to make it a really good one for you.

4. You can eat whatever the hell you want. I mean it's not like you have to worry about having clogged arteries fifty years from now.

5. You can get your partner to "secretly" tell everyone at the family reunion that all of the medications you're taking are making you a bit delerious. After that you can go around throughout the day telling everyone who has ever pissed you off exactly what you've thought of them all these years. (Be sure to include a few jibberish statements every now and then to make it more believable.)

6. During chemotherapy, you can sleep for an extra thirty minutes every morning because you don't have to worry about fixing your hair before work.

7. You can surprise all of the radiation technicians by coming to your treatment wearing a bikini and telling them that you're ready for your tanning appointment.

8. When you're in the hospital hooked up to a bunch of tubes and machines, you can have a good laugh at your sibling's expense by telling all of your young neices and nephews that you got like that from eating too many vegetables as a child.

9. You can sleep in on election day. After all, who cares what candidate wins? It's not like you're going to have to live with them for the next couple of years. Or better yet, do go out and vote and tell everyone in line that you've been a life long(name of whatever political party you hate the most) voter but you're using the final election day of your life to vote for the other party because you've finally seen the light and decided to do the right thing for the first time before you die.

10. Having a few cancerous ribs removed from your chest will make it a lot easier to fit into those too-small clothes you've been saving in your closet.

11. You can tell people who don't know about your cancer that you got all of those scars from saving a small child from being mauled by mountain lions because everybody loves a hero.

12. When you go to the grocery store, always wear something that shows your radiation burns and leave your wig at home. Then when you get in the long line, you can ask people if they'd be so kind as to let you go ahead of them because you have to hurry up and get back home to your wife/husband/partner who is even more contagious than you are. I have it on very good authority that this one works great.

13. Make random strangers angry in crowded parking lot by parking in the handicapped spot and then using your cane as your partner as you do the Merengue all the way to the entrance of the building.

One small comfort, throughout this past year of living with cancer, is that I’ve got some life insurance. This would help provide for the needs of my family, should anything happen to me. My father sold me my first policy years ago, when I was still in seminary, during a time when he was briefly in the insurance business. Some years later, Claire and I each purchased another policy. Additionally, the church’s pension plan provides a modest “death benefit” – efffectively, a term insurance policy – whose payout decreases with age. (I’ve always found that phrase “death benefit” a little odd: an oxymoron, even.)

Do we have enough insurance? Probably not. But at least we’ve got something.

Lately, I’ve been thinking about buying more insurance – although I realize that, with my recent health history, that could be problematic. When a mailing arrived from the Presbyterian Church’s Board of Pensions a few weeks ago, advertising an open enrollment period for additional death benefits, I figured this could be my chance.

An earlier conversation with our regional Board of Pensions representative was somewhat reassuring. A cancer diagnosis, he told me, doesn’t necessarily disqualify me from coverage. It’s a group policy, so as long as I meet their basic medical underwriting requirements, and am willing to put up with a one-year “pre-existing condition” exclusion, there’s a possibility I could still be eligible. There’s no medical exam, just a barebones medical-history questionnaire.

What’s more, the cost is not affected by health circumstances (other than a separate rate table for smokers, which doesn’t apply to me).

We were talking about life insurance just last week, at the Cancer Concern Center support group. I found out that life insurance is a big issue for many cancer survivors. In many cases, if you don’t sign on the dotted line before being diagnosed, you’re either completely ineligible, or you’re subjected to such high premiums that you may as well be. The group seemed to think the Board’s policy sounded unusually generous.

There remains but one other obstacle to my filling out the application: an obstacle that’s within me. “What does it mean,” I keep asking myself, “that I want to get more insurance? Does it mean I’m giving up? Does it mean I believe, in my heart of hearts, that my remission is not going to last long?” Filling out the application seems a bit like an act of self-betrayal.

I’ve gotten over that. Today I complete the application, and leave it for our church treasurer to sign (I’ll pay the premiums myself, but it’s part of my employee benefits, so she has to sign off on it).

I still feel a bit uncomfortable about it, but I’ve put those uncomfortable feelings aside. Completing the application doesn’t mean I’m giving up. It means I’m looking out for those I love.

Monday, November 13, 2006

Another monthly port flush today. After nearly an hour in Dr. Lerner's packed waiting room (cancer has never been so popular, it seems), I'm ushered into an equally crowded nurses' room. Today it's an oil change for me, rather than a transmission job – so, they've squeezed my appointment in amongst a half-dozen or so patients who are receiving other treatments. Chemo bags hang from hooks on the ceiling over some people's heads (evidently, their treatment is still not long enough to qualify for a lounge-chair in the infusion room). Others move in and out very quickly: they're just here to get shots (Procrit, Neulasta, that sort of thing).

Most of them are considerably older than me: seventy- and eightysomethings. I'm just a newly-minted fiftysomething, but I've got a bum set of chromosomes much like theirs. Or, maybe, not so much like theirs. Mine went haywire a decade or two earlier, in terms of lifespan.

My nurse today is one I haven't seen before. She misses my deeply-implanted port on her first attempt at the docking procedure. Ouch. She tries again, but with a longer needle. This time it works. Pressing the plunger on the syringe, she injects saline solution into the vein buried deep within my chest. My heart muscle dispatches the stuff in the blink of an eye. A second later, I taste the plastic and feel the bubbling sensation in the back of my throat.

The words of an old jazz standard drift across my consciousness. "I've got you... under my skin." Yeah, I've got this little button under my skin, all right. There it will stay, until it's either needed again, or until the doctor decides it won't be needed for a long time. Let's hope for the second of the two alternatives.

My neighbor in the nurses' room, it turns out, is the mother of a woman whose wedding I performed about ten years ago. Her daughter is an inactive member of our church: still on the rolls, although we rarely see her. The mother recognizes me, and tells me all about her grandchildren. We don't discuss her cancer (I assume it's cancer – although, in this office, it could also be any one of a number of blood disorders). Nor do we mention mine. Just kids and grandkids. Life, in other words.

On my way out, I learn that my appointment with Dr. Lerner must be rescheduled. It seems someone in the office miscalculated the date, booking me for exactly three months from my last appointment. This doesn't account for the fact that the CT scan has to happen first – and that, they tell me, would place the scan on the calendar fewer than three months after my last one. "The insurance company would never approve that," they tell me. "If it's a day under three months, they'll bounce it right back." So, we push the doctor's appointment back a week or two, in order to allow time for the CT scan. My scan is now scheduled for November 30th, and my doctor's appointment for December 8th.

"I've got you... under my skin." I hum the catchy Cole Porter ditty to myself, on my way out to the parking lot. So what's really under there? An implanted port, for sure. But is there still more cancer?

Wednesday, November 01, 2006

Several days ago, in a quiet way, Claire and I celebrated my 50th birthday. The actual day was October 28th. I was up at our Adirondack camp (vacation cabin) near Jay, New York. I’d been up there for a week of study leave, writing furiously, as the deadline for my latest book, the third and final installment of the Lectionary Preaching Workbook series, approaches.

I didn’t bolt out of town to avoid a big birthday celebration. Really. It’s just that last week was the only possible week I could get away, this fall. It was Reading Week at New Brunswick Theological Seminary, so I didn’t have to teach my weekly, Thursday-evening course.

On my birthday, Claire rode up to join me, taking the Amtrak train to Plattsburgh, New York. As I met her at the classic, Victorian rail station, I was surprised at how few people got off the train – no more than 4 or 5 individuals. This is no out-of-the-way spur, I thought to myself. It’s the Amtrak main line between New York and Montreal. Claire’s was the only train of the day connecting those two major cities, and it was more than two hours late (equipment problems). It reminded me of how we’ve let our nation’s once-mighty passenger rail system slip into near-oblivion.

So, if you want to know how I spent my 50th birthday, at least part of the time I was waiting for a train. I have to admit that was better than the earlier part of the afternoon, though, which I spent in a dentist’s chair. I’d lost a temporary crown the evening before, and was fortunate, indeed, to find a wonderful dentist, Dr. Michael O’Connor, who agreed to open up his Plattsburgh office on a Saturday morning, even though I’m not one of his patients.

The irony of that experience wasn’t lost on me. It was my fiftieth birthday, and my teeth were falling out. Literally. Tempus fugit.

It was good to see Claire, though. After driving back to our little house, we went out for a nice birthday dinner at one of our favorite restaurants, overlooking the rushing rapids of the AuSable River. The next day we enjoyed some quiet times, watching the snowflakes swirl (thankfully, they didn’t stick; it was still a little too warm for that). At one point, we were treated to the rare sight of a doe and a faun, foraging for food just outside our window.

How do I feel about turning 50? To be perfectly honest, it seems kind of anti-climactic. The sturm und drang of my cancer experience overshadows any piddling anxiety I might otherwise have felt, concerning this milestone birthday.

I’m not upset about turning 50. In fact, I’m glad I’ve made it this far. I was thankful for a quiet day, in one of my favorite spots, with my best girl by my side.

Claire and I are talking about throwing a bigger 50th birthday party, for both of us (she passed that milestone herself, in July). That party will do double duty as a belated end-of-chemo celebration for me, and also to commemorate Claire’s 15th anniversary of ordination as a minister. We’ll probably plan that celebration sometime later this month, if we can find a date that works.

Milestone birthdays are significant events, for most people – but maybe less so, for cancer survivors. For us, any healthy day is a good day.

Sunday, October 22, 2006

I conducted a couple of difficult funerals this week. No funeral is easy, but each of these involved men in their thirties – the sort of death that’s just not supposed to happen. One man died in a car accident, the other from stomach cancer that was diagnosed only four or five months ago.

Both funerals involved the familiar ritual of family and friends gathering at the funeral home, for what is blandly and euphemistically called “visiting hours.” In my more than 25 years of ordained ministry, I’ve been to more of these gatherings than I could possibly count. It goes with the territory, when you’re in ministry.

There’s not a lot that happens, during visiting hours (or so it would appear, to the untrained eye). After spending a few moments greeting the bereaved family and expressing words of sympathy, most guests simply sit or stand around, sharing small talk with neighbors. It’s one of the few occasions in life when all you have to do is show up.

Over the years, I’ve come to realize there’s a lot more going on during visiting hours. What the eye sees is but the tip of the iceberg.

There’s a new book called Social Intelligence: The New Science of Human Relationships, by Daniel Goleman, that’s been getting a lot of press. I haven’t read it, but from the reviews, it appears to have a lot to say about what goes on behind the scenes in many human interactions.

Based on psychological research, Goleman’s point is that a large portion of our emotional interactions are non-verbal, and take place on a subconscious level. In an October 10th essay in the New York Times, “Friends for Life: An Emerging Biology of Emotional Healing,” Goleman describes his findings:

“Research on the link between relationships and physical health has established that people with rich personal networks – who are married, have close family and friends, are active in social and religious groups – recover more quickly from disease and live longer. But now the emerging field of social neuroscience, the study of how people’s brains entrain as they interact, adds a missing piece to that data.

The most significant finding was the discovery of ‘mirror neurons,’ a widely dispersed class of brain cells that operate like neural WiFi. Mirror neurons track the emotional flow, movement and even intentions of the person we are with, and replicate this sensed state in our own brain by stirring in our brain the same areas active in the other person.”

Goleman reports that some researchers have used language like “the merging of two discrete physiologies into a connected circuit.” They think they’ve found evidence in brain chemistry to prove the existence of such a connection. While the physiology of this brain-to-brain link is highly speculative at this point, there does seem to be some circumstantial evidence that such a link exists: such as one study that asked women volunteers to submit to MRI imaging, while awaiting a mild electrical shock. When one of these experimental subjects waited alone, her anxiety level increased. When a stranger held her hand, her anxiety level was unchanged. Yet, when the woman’s husband held her hand, “she not only felt calm, but her brain circuitry quieted, revealing the biology of emotional rescue.”

No, there’s a lot going on during visiting hours in the funeral home – as people awkwardly mill around, seemingly doing nothing. They may not be consciously aware of it, but they’ve come there that day to plug into the power grid of spiritual and emotional support. By their mere presence in the room, they lend strength to their bereaved family, friends or neighbors.

Centuries ago, the Elizabethan preacher and poet John Donne penned these famous words, as he wondered, during a time of plague, whether the funeral bells from a nearby church might soon be tolling for him:

“No man is an island, entire of itself; every man is a piece of the continent, a part of the main. If a clod be washed away by the sea, Europe is the less, as well as if promontory were, as well as if a manor of thy friend's or of thine own were. Any man's death diminishes me, because I am involved in mankind; and therefore never send to know for whom the bell tolls; it tolls for thee.” ("Meditation XVII," from Devotions Upon Emergent Occasions)

One thing my cancer has taught me is the importance of these connections between people. We can be agents of each other’s healing.

About Me

I am Pastor of the Point Pleasant Presbyterian Church, a 450-member congregation in Point Pleasant Beach, New Jersey. I also serve as Stated Clerk of the Presbytery of Monmouth - a regional governing body composed of 45 Presbyterian Church (U.S.A.) congregations in central New Jersey. From time to time I teach Presbyterian Polity at Princeton Theological Seminary and Presbyterian Studies at New Brunswick Theological Seminary. I am married to the Rev. Claire Pula, Director of the Bereavement Program, Meridian Hospice. We have two children: Benjamin, a singer-songwriter, and Ania, an artist. I write two blogs: "A Pastor's Cancer Diary," in which I reflect on my ongoing experience as a cancer survivor (Non-Hodgkin Lymphoma, also Thyroid) and "Monmouth Presbytery Clerks' Corner," a place for Clerks of Session and other interested folks with an interest in Presbyterian polity (church government) to gather online.